Jeff Tohl endured testing, five months of chemotherapy and a stem cell transplant during the three years that followed his cancer diagnosis — a rare form of non-Hodgkin’s lymphoma. With a clean bill of health and regained strength, he thought he was out of the woods.
But when his white blood cell count dropped again in November 2009, Tohl, who was treated for mantle cell lymphoma, discovered he was part of an unlucky minority: Following a stem cell transplant, 7 percent of patients are at risk for developing leukemia. To keep the leukemia at bay, he’d need another stem cell transplant, this time from a donor. But as a Jew, he soon discovered that finding a donor would prove nearly impossible.
After three years of illness and worry, Tohl’s family decided it was time to take action. They have since become active in organizing events to raise awareness about stem cell donation with the hope of finding a possible match for Tohl.
“Suddenly I realized, we [can] be more proactive,” said Ellen Pressman, Tohl’s wife.
Upcoming drives to register potential stem cell donors include Temple Isaiah on March 21, the Israel Independence Day celebration in Woodley Park on April 25 and Valley Beth Shalom on May 2.
Stem cell transplants replace a patient’s unhealthy blood cells with those of a healthy donor. The transplant process involves harvesting cells from the donor’s blood — called peripheral blood stem cells donation — or from bone marrow; the harvested cells are then injected into the patient. Over the course of several weeks, the cells duplicate and eventually account for all of the patient’s blood cells.
The transplants are often used to treat diseases and blood cancers like leukemia.
In order to find a viable donor, a person’s human leukocyte antigen (HLA) tissue type must match the recipient’s. The closer the match, the less likely that the recipient’s body will reject the transplant.
Often, doctors will first seek a donor from within the patient’s family. But those matches occur only about 30 percent of the time. The next option is to find an unrelated donor, and that can take time — which is often the last thing a cancer patient has.
In order to expedite the search for a match, nonprofit organizations like the National Marrow Donor Program (NMDP) keep lists of donors and their HLA tissue types on file. Be the Match Foundation, part of the NMDP, is one of the largest such registries in the country, with more than 8 million names on file.
And yet, said Sharlene Risdon, community outreach specialist at Be the Match, “When it comes to Jewish patients, we have a really hard time finding a match.”
Tohl’s family was devastated when they learned about the odds they were facing. But rather than sit back with fingers crossed, the family began to spread the word about Jeff’s diagnosis. Pressman and her children started by knocking on neighbors’ doors. They contacted their synagogue and other community organizations. Determined to do everything they could, the family held its first donor drive in January. At the drive, potential donors got cheek swabs to determine their tissue type.
“We were expecting about 200 people,” Pressman said. Instead, nearly 600 people showed up — an unprecedented turnout, Risdon said.
“It restores your faith in humanity,” said Tohl, who wasn’t able to attend the drive.
The drive didn’t turn up a match for Tohl, so his relatives’ efforts to find a donor continued, particularly within the Jewish community.
Jay Sanderson, president of The Jewish Federation of Greater Los Angeles, has stood behind the family’s work.
As Jews, he said, “We have a responsibility to take care of our own and to take care of our neighbors. If we have the ability to help somebody by giving blood or by swabbing, I hope that everybody does it.”
The Federation plans to incorporate information about donating stem cells or bone marrow at many of its upcoming events.
“We need to get more people tested,” Sanderson said.
Since January, Tohl’s family has held several drives. Jeff’s brother David and his brother’s children have set up what Pressman calls a “campaignlike” workspace, in which they reach out to Jewish organizations around the country to spread the word about the need for donors.
Meanwhile, Tohl waits, along with his wife and children, and it doesn’t get any easier. Pressman has spent years propping up her family and is getting tired. For their three children, she said, the experience has been extraordinarily painful. There was a trip to look at colleges with their son that didn’t happen, and questions no parent wants to hear.
“At 7:30 in the morning, they would ask, ‘Is my dad gonna die?’ “ Pressman said. “How am I supposed to answer that?”
As for Tohl, fatigue is setting in. “I’m tired all the time,” he said. “You get through one thing, and something else happens.”
To that end, Sanderson believes that becoming a donor is something that the Jewish community must take on as a whole. “It isn’t a question of Jews not doing it,” he said. “It’s a question of every Jew doing it.”
Upcoming Be the Match registration events will be held March 21, 10 a.m. -1 p.m., at Temple Isaiah, 10345 W. Pico Blvd.; April 25, 8 a.m.-4 p.m., at Israel Independence Day at Woodley Park, 6350 Woodley Ave., Van Nuys; and May 2, 9 a.m.-3 p.m., at Valley Beth Shalom, 15739 Ventura Blvd., Encino. For more information visit www.marrow.org.